Many for the Rare – unity in support of the affected
Many for the Rare is part of the Kindness is Medicine initiative and brings together the general public, providing a space for support, solidarity, and active participation in raising awareness about rare diseases.
While panel discussions are aimed at the professional community, addressing key issues and seeking solutions within the healthcare system, Many for the Rare allows citizens, families of patients, and all those who wish to contribute to creating better conditions for people with rare diseases to engage in this important topic.
Through educational, sports, and entertainment activities, participants have the opportunity to better understand the challenges faced by those affected by rare diseases.
A special focus is placed on the importance of clinical trials and access to innovative therapies, which are crucial for improving the quality of life of patients.
The event was organized for the first time on September 7, 2024, at Jarun in Zagreb.
Goals of the Event Many for the Rare
Raising awareness
Raising awareness about rare, incurable, and malignant diseases – educating the general public about the challenges faced by those affected by rare diseases and the need for greater support.
Connecting organization
Creating a stronger support network among associations, patients, and their families.
Support for patients
Involving citizens, volunteers, and institutions to provide greater support for patients. Informing how access to innovative medicines can significantly improve patients' lives.
Rare diseases and what zebras have to do with it?
American physician Theodore Woodward was the first to say the phrase: ‘When you hear hoofbeats, think of horses, not zebras,’ reminding healthcare workers to first consider common diagnoses before opting for rare and unusual ones.
Today, many people with rare diseases feel just like zebras, especially if they have puzzling symptoms that make them wait up to 7 years for a diagnosis.
There are more than 7,000 identified rare diseases worldwide. In Croatia, slightly more than 250,000 people suffer from them, highlighting the seriousness of the problem and the need for specialized attention and therapies. In Europe, the number of patients exceeds 36 million.
Unfortunately, only about 5% of rare diseases have approved treatments, while most patients remain without appropriate therapy, facing low levels of awareness and lack of resources.
Rare diseases remain under-researched, which further complicates the struggle of patients and their families.
Do you know someone with a rare disease?